The Blood Bank called my husband and I about giving blood. We told them I had APS and the caller said that she would talk to her director and get back to us. She called back and said it was not a problem that I had APS. My questions are: 1. Is she correct? 2. How does giving blood effect a person with APS? 3. Does it actually help a person with APS feel better temporarily to give blood? 4. If yes to questions 1 and 3, does it matter if you give whole blood or platelets?

Are you on medication? I am on warfarin, and therefore cannot give blood. I always used to, and it made me feel good, but now I don't risk it just in case I damage anyone else. Will be interested in other responses.

To be totally honest i am not 100% sure. But i do know that certain medications do not permit you to donate, especially blood thinners. I have SLE and have been told by my consultant that i cannot donate. I do know they have a specific list of medical questions and to be totally honest it makes it sound like it is not recommended for people with APS as well as other conditions. I think its best to speak to your doctor hun. Hope you get an answer that puts your mind at rest.

As with the first poster, I can't give blood because of warfarin. I asked, visiting the blood donation centre while at the hospital for something else. I used to donate blood, then platelets. I asked if my high platelet count could have contributed to APS, but apparently it's a different clotting mechanism.

Your blood is taken and split into constituent parts - so it may be that if unmedicated, or just asprin, it's safe to donate.

I'm not sure why you would want to give blood whilst knowingly having a blood disorder? Am guessing you are on medication? I think you might be better off spending your energies elsewhere and leave blood donation to those with normal bloods?

I used to give blood and was O-Neg so they liked mine a lot but since being on warfarin and many other tablets I am not allowed to any more. I used to feel fantastic after for nearly 3 months as well just wish they could do some letting on me still just for that selfish reason?

Thank you for sharing this link. I wonder if blood banks in America follow the same protocol or if this particular blood bank was not really aware.

To answer some of the questions above; I am currently on 81mg of aspirin and do not take other blood thinners. I have not had a major blood clot as of yet. I had early miscarriages starting in 1986, before doctors knew anything about APS. I tested positive recently for APS after going to see a rheumatologist about my joint pain. It happened to show up in a battery of tests they do for Lupus. I do not have Lupus, but primary APS. I appreciate all the comments. I know that in my area, there needs to be a lot more education on this disease. I was surprised when the lady from the blood bank called back and said "not a problem". I have not donated blood and would not want to put anyone at risk receiving my blood. However, it was brought to my attention and I wanted to know what the experts in the field have to say about this. If there are possibly many people who have APS and not a clue they have it, such as myself for many years, than the question how many give blood having APS. Do blood banks test for this. I also read a commentary from a person with APS who said that she felt so good after bloodletting. I would like to know more about this and what possible benefits or dangers are involved in bloodletting and what research has been done in this area.

I live near you in the Kerrville area and feel your pain in the lack of healt care providers that have an actual expertise in APS proper.

I was just recently diagnosed with actual APS ( secondary to a connective tissue auto immune disease) in July and was hospitalized in Methodist specialty and Transplant a month ago with two DVT's in the arm. A already had a Rheum in place, as well as neurologist, gastroenterologist, and a few others. In quick order we now have a Hemotologist and internal medicine and a vascular surgeon . My rheum has never had an APS patient - so my team is calling in another rheum. I will see him Jan 4. But I'm not sure what his actual working knowledge is. I know UT health science center has two physicians / researchers also. Dr Robin Brey and Rebecca Romero. I am scheduled to Dr Romero on Jan 17th.

We are having trouble keeping me INR up in the safe zone of near 3 despite Coumadin levels alternating between 7.5, 8 , and 10 throughout the week.

I'm interested in knowing who your team is. I have a stellar team - minus one. Do you know if we have an actual rheum ( outside of the UT health science center) here who specializes in APS? Anywhere in a Texas? Who are you seeing for Rheum?

This honestly makes me mad. I know my mom is allowed to donate and has multiple sclerosis. I'm one of the patients on the receiving end of those donations though and my body goes through hell and back for many days after getting IVIG. I just had my 3rd treatment on Friday and I'm due for one next Monday. It's every 10 days. Im going to ask my APS doc about it when I see her. But I think getting IVIG from someone whom already has my disease, defeats any and all logic I've me trying to use it to get better, and trust me, it's the sickest I've ever felt after having the treatment. First time was severe migraine for a week. Second one was turning beat red and having an anaphylactic reaction 5 days later and being thrown into a flare. This one was actually run correctly (30mg/hr for a 20g bag) and it's been like having the worst flu of my life, but throw constant vomiting, fever, stabbing chest pain, and awful aura migraine in there. Oh and the bloating. 😱😱😱😱. I thought I was going to end up in the ER last night. My body HATES these treatments but I have to have them to live.

So as being on the recipient end, just please be careful. I can see blood donation (plasma donation is where these nasty anitibodies I get come from). I'd just be super careful.

Dani

Btw, that anger isn't directed at you. It's directed at anyone who thinks s person with our disease should donate because people like me on the receiving end are going through hell trying to get better using these donations.

I would not want to give a blood donation until we all know the cause of Aps. To the lady who is receiving IVIG infusions, are you having Hydrocortisone injection with every infusion? I had IVIG. TO BRING MY PLATELETS UP AND IT GAVE ME A ASEPTIC MENINGITIS SO BAD I HAD TO GO TO A+E. ALL THE BEST ELFIE

Elfie, they pre board me with a liter of saline, 100mg of steroids, 50 mg of Benadryl, 1000mg Tylenol, and 600 mg Ibprofen. It's awful. The past two days my tongue has been blistering and literally shedding a layer. I'm heading to the doc today. My mouth is too painful to eat or drink at all.

To answer some of the questions above; I am currently on 81mg of aspirin and do not take other blood thinners. I have not had a major blood clot as of yet. I had early miscarriages starting in 1986, before doctors knew anything about APS. I tested positive recently for APS after going to see a rheumatologist about my joint pain. It happened to show up in a battery of tests they do for Lupus. I do not have Lupus, but primary APS. I appreciate all the comments. I know that in my area, there needs to be a lot more education on this disease. I was surprised when the lady from the blood bank called back and said "not a problem". I have not donated blood and would not want to put anyone at risk receiving my blood. However, it was brought to my attention and I wanted to know what the experts in the field have to say about this. If there are possibly many people who have APS and not a clue they have it, such as myself for many years, than the question how many give blood having APS. Do blood banks test for this. I also read a commentary from a person with APS who said that she felt so good after bloodletting. I would like to know more about this and what possible benefits or dangers are involved in bloodletting and what research has been done in this area.

As far as "bloodletting" is concerned I should imagine feeling better is more a placebo effect! The link I put up from the NHS site is the national site responsible for collecting blood around the country. I don't know if you have a similar service in the USA but I would think they would have the same Directory with the same advice.

I think you need to separate your conscience and the need to do good with the fact that you have a medical condition which is not compatible with giving blood. There are lots of other things that you can do if you want to help people that will not involve any risk. Becoming an advocate or setting up a support group can be more helpful or if you don't want it to be APS related specifically, volunteer to help in a local Hospice! There are plenty of things I can suggest.......

Blood letting is great if you have my other rare blood disease Polycythemia Vera! It's also a rare thick blood dis order! I use to blood let every week one pint then every mont then every three months! This went on for 13 years! Under a Hemotologist all that time and it tuk me losing my leg to find out I have APS!!! Polycythemia is rarer than APS! Only 60 thousand people on USA HAVE IT!!! They call my blood sludgy! Weird that I have both! I've been in remission since I've been DX'd with APS! I won't give blood! Good Luch and GOID health!

As someone who had 12 pints of blood transfused at age 10, never had any autoimmune symptoms at all before then and then immediately afterwards developed the typical lupus butterfly rash, I'm really fascinated by the relationship between triggers of autoimmune disorders and blood donation. I have no family history of any kind of blood disorder, nor stroke, nor heartattack or miscarriage. I have had over my lifetime so far three major blood transfusions and have had odd or extreme side effects after all of them.

I appreciate a lot of people who have blood disorders may not necessarily even know they have them, and blood bank services are so under resourced that there's no real incentive to screen out things that don't have a specific negative correlation, but I have to wonder if blood transfusions contributed to my condition as much as helped me.

I would love to give blood to pay forward the kindness of other people who have helped me, but I wouldn't wish this condition on anyone.

When I had plasmaphersis I was asked if the plasma taken could be used for other things rather than donation to people, I had no problem with that.

The mention of feeling better with bloodletting comes into play with another disease called polycythemia vera. This is where the body produces too many red blood cells. Bloodletting is one treatment used to release the pressure of too much blood when dealing with this disease. If that does not work then medications are prescribed to treat as this is considered a blood cancer, but it does not spread. I have heard many testimonies from people with this disease that after bloodletting they feel so much better. As far as the USA, my hematologist told me absolutely not just as Gina D mentioned because they do not know enough about autoimmunes to say yay or nay.

I chased this up on behalf of the charity along with the backing of the medical advisors when I first became manager ... way back in 2006.

The National Blood Service were not entirely clear on the guidelines, but sent the following information by letter:

“We will not accept people who have had a diagnosis of systematic lupus erythematosis … or any potential donor with a thrombophilic condition. However, provided the potential donor meets all the required selection criteria found at transfusionguidelines.org.uk and provided they have never had an episode of thrombosis they may be accepted”.

So, if you're on anticoagulation treatment and have had any thrombotic event (we couldn't get them to clarify whether that included recurrent miscarriages) then, no, you shouldn't give blood.

To be on the safe side, the charity recommends that anyone with APS/Hughes does not give blood.